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Does SMA help forge friendships with other neuromuscular patients?
Whenever I meet someone who has experience with a muscular dystrophy patient, I am always asked what the difference is with SMA. The symptoms seem so similar that people could mistake one for the other. I have to then explain that though the diseases manifest similarly, they are caused by different mechanisms and have to be medicated and cared for differently. Nevertheless, the similarities have helped me to forge friendships with muscular dystrophy patients because certain neuromuscular experiences overlap. One of my dear friends is Shalom, a columnist at Muscular Dystrophy News.
I’m reminded of those interactions by columnist Helen Baldwin’s column: “When SMA and ALS connect in a good way.” Even years after her son Jeffrey’s death, SMA is still helping her make friendships with ALS patients.
While a rare disease like SMA can feel isolating, sometimes it isn’t. Sometimes, it helps us to form communities. As we continue celebrating SMA Awareness Month, I thought I’d ask our forum members if you’ve also experienced anything like Helen and myself.
Has SMA helped you to make friends too?
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1 Reply
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Besides Shalom, I also have a best friend with muscular dystrophy named Phoebe. That girl is a ball of chaos I can’t imagine my adult life without. I’ve written about her briefly in a few of my columns too.
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